From CEO Laura Szutowicz, HAE UK:
The last quarter of the year sees our National Patient Days which are always well supported and are a lot of fun as well as very educational.
In the UK we are very lucky to have a lot of expert clinicians to call on, and this year our Scottish Patient Day was held in Glasgow. So the Glasgow team were called on to help and, as always, they were magnificent! Dr Moira Thomas led the meeting. In retrospect, we had made the mistake of holding the Scottish Day on the same day as the final of the Rugby World Cup (but we booked the day before they did!) so it was a bonus for us that Scotland missed going to the final. Dr Thomas is a keen rugby supporter and so she use the rugby team analogy in her presentation about how the C1-INH and bradykinin cascade works….. how one protein passes to another and then to another. I know I found it a very vivid and clever way to explain a complex process.
Lindsay Lockhart, one of the Public Involvement Advisors at the Scottish Medicines Consortium (SMC), gave an explanation of how the SMC make decisions on why and how to prescribe medications. This was particularly of interest because I have been working with them in order to have Lanadelumab accepted onto the formulary for use in Scotland. That decision will soon be made.
Hazel Miller, one of the immunology nurse specialists, presented on how to manage attacks, giving some helpful tips on how to make using medication easier and practical ways of alleviating swellings. Scott Weddle, who does not let his HAE stand in the way of him being a personal trainer, sports masseur and extreme sports specialist, gave an inspiring ‘Patient Story’ culminating with the information that he was about to do a 5,000-meter parachute jump. He also was very informative about how in his experience, his HAE attacks have decreased in line with him getting fitter. Other people have also found that being fitter helps reduce their attacks, which is one reason why we are supporting a clinical study being run in Wales to monitor HAE patients with a ‘Fitbit’ to see if this can be quantified.
Dr Thomas presented again on getting the most from your appointment and also the new products coming in the future, many of which are being researched at centers across the UK and Dr Patrick Yong travelled up from Surrey to give his popular presentation on the ‘History of HAE’. Patrick is also the lead on the HAE Consultant Network, which is now functioning as a division of the UKPIN which is the UK association of immunology doctors and nurses. The day ended with a lively Q&A session, with our speakers joined by Dr Charu Chopra from Edinburgh who also gave up her Saturday to come to the meeting.
Oh, and in case anyone didn’t know, the Rugby World Cup was won by South Africa, beating England 32-12.
Royal London Hospital ran their own Immunology and HAE Patient day, which I was invited to attend. They have the largest number of HAE patients in the UK and also are very busy in research. It is always great to meet the team there and it was a great meeting.
On to our National Patient Day in Manchester. This also clashed with a local football match and several concerts so travelling up the day before by train was something of a challenge as the trains were totally rammed full! However, we all managed to arrive safely and had an evening drinks reception at the hotel. This has become a standard part of our procedure now and it is always great to meet old and new members at it.
So onto the day itself, we had a great opening speaker in Dr Dawn Harper. She is a GP in her day job with a particular interest in Women’s Health, but she is also well known for her appearances on TV where she co-presents ‘Embarrassing Bodies’ and is one of the medical experts appearing on ‘This Morning’ and also on the radio on ‘Women’s Hour’. Dawn gave a very useful and insightful presentation on really speaking to your doctor and getting to the bottom of problems. She also has a wicked sense of humor and was very funny!
Next was one of our medical advisory panel and a favorite speaker, Dr Scott Hackett who is one of the very few specialist pediatric immunologists in the UK and as such looks after the younger generation of HAE patients. His presentations are always full of information and presented in an easy to understand way and again with humor.
We then had another star, Dr Shuayb Elkalifa from Salford Royal. He was one of the team that ran the 10km for us back in May and he just fizzes with energy. He was tasked with the job of explaining the science behind HAE and he tackled this by casting himself as the ‘Superhero C1-INH’ and using members of the audience to be Factor XII, kallikein and Rachel Annals got cast as ‘the bad guy’ bradykinin! Dana Shapiro managed to film this and put it on our Facebook page, it is great fun and well worth scrolling through our Facebook page to find!
One of our greatest supporters is Michal Rutkowski who has been coming to our Patient Days for several years now. He is one of our most popular speakers as people love hearing about what is going on, the World-Wide Perspective on HAE around the globe and the various activities of HAE International.
Our Patient Story was our wonderful Alex Graham, one of our Patient Ambassadors, who told us her patient story and also updated on the Young Advocates group. In the afternoon, Patrick Yong gave a different presentation of the hows and whys of new treatments and the importance of being involved in clinical trials.
Our presentations ended with June Cole giving us a look at the various activities she has done to raise awareness, but particularly her going into GP surgeries and A&E departments to tell them all about HAE. June is a very good ambassador for HAE UK, and she and her husband Peter deserve our heartfelt thanks.
The day finished with some patient breakout groups, mentored by Lisa Smith, John Dempster, Scott Hackett, Patrick Yong and Lorena Lorenzo, then a Q&A session to wind up.
Every year I find myself thinking ‘how do we go better than that’? I truly think our two Patient Days this year have been amongst the best we have done. Rachel is amazing the way she manages all the logistics and controls my wilder flights of fantasy and we could not put on these fantastic days if not for the support of our friends in the pharmaceutical industry who help with the cost of outing on these events. Furkhanda and Judy who managed the registration desk, sold raffle tickets and are generally huge supports, the clinicians who give up their time and expertise so generously… we owe them all huge thanks and appreciation. But you just wait till next year… have we got plans!
We are very pleased to announce that the Scottish Medicines Consortium (SMC) have approved Lanadelumab for use in HAE patients in Scotland. HAE UK was consulted throughout the process and SMC and their teams are just lovely to deal with!
The HAE International map has been updated with information on HAE knowledgeable physicians in the United Kingdom. Please go to https://www.immunology.org – then scroll down to “FOR PATIENTS & THE PUBLIC”, choose “Find a clinical immunologist”, click and choose the relevant region on the UK map.
A Happy Christmas and prosperous New Year to all our HAE International friends!
